Brave Jo on the cruel disease that robbed her independence
AFTER leaving university Jo Knowlton focused on starting a career with the police force, as a “forensic imaging officer”.
Instead of spending her salary on luxury holidays she got a mortgage for a flat in Dundee, saved for a car and felt she had plenty of time to meet “Mr Right”, get married, have children, as well as travel.
So she was left “heartbroken” when she was diagnosed with motor neurone disease aged just 29, depriving her of the future she had planned.
Since her diagnosis on August 12, 2019, Jo has written a blog charting her journey with MND to raise awareness of how it affects people living with the rapidly progressing terminal illness.
Three weeks after receiving the crushing news she wrote: “I know I’d make a great wife, a great mother. I’m heartbroken that I don’t get to experience that. I’m heartbrolong ken my friends will grow old without me.”
Jo, now 31, is backing a Sunday Express crusade calling for £50million of Government funding for an MND Research Institute to co-ordinate research for effective treatments and hopefully a cure.
After growing up in Peebles in the Scottish Borders she moved to Dundee aged 17 to study fine art and then forensic art, before working in a bank and completing an internship with Turkey’s national police in Ankara to land her dream job with Police Scotland.
Jo said: “I really enjoyed my job, I never dreaded going in and always looked forward to doing it.”
However, after five years she noticed a weakness in her hands when she went to test drive a new car in February 2019.
Speaking from a specially-adapted bungalow in Dundee where she now lives with mother Anna, 70, and her pet dog Chino, she said: “It was the first time I had been able to afford a car of my own for a
time, so I went to test drive it. The salesman was waiting for me to start the engine and I was trying to turn the key – but nothing was happening.
“Because I had not driven for a while I thought maybe it was just stiff, or there was another explanation for it, so I tried not to think too much of it.
“But then gradually as the months went on I noticed that my fingers weren’t closing together, they wanted to stay separate and I was struggling with buttons and zips, and coins in my purse.
“Eventually I went to the doctor. I felt like a bit of hypochondriac saying ‘My fingers don’t close together’. I didn’t think
she would be able to do or say much, but she referred me to a hand specialist at the hospital. She thought there might be a nerve trapped in my arm, so we did a nerve conduction study to find out where the nerve was trapped, and this found my nerves were abnormal at rest.
“They took me into hospital for an MRI scan and a lumbar puncture. Everything came back normal and healthy.when that happens all that is left is MND.”
Jo continued: “It was a massive shock because I thought MND was something that happened to older people.
“I have never been ill, I have always been a very active person and when I was
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getting these symptoms I thought there would be a simple explanation that could be easily rectified. I thought maybe worst case scenario multiple sclerosis, I did not think MND was a possibility. But when the neurologist said ‘I am afraid you have got MND’, because I did not know much about it I said, ‘Well, what do we do now?’
“He said, ‘I am afraid we don’t do anything, there is nothing we can do’.
“That was really hard to hear and it was tough for my family and friends to accept.”
Jo continued doing the job she loved until March last year, when the Covid-19 pandemic forced her to shield.
The progression of the disease since then means she now struggles to use a computer unaided. Jo says she started her blog “because I think it is something people don’t know about or hear about”.
She explained: “It’s important people know what happens to the body when you have MND, and to try and raise a bit of awareness so that people will fund research and do fundraising events.”
She added: “In the two years I have had MND it’s stripped me of every part of my independence. I have gone from working full time and living alone with my dog to living with my mum, needing carers four times a day and not being able to work.
“I need help with absolutely everything, from washing and dressing to feeding. I wear a ventilator at night because my breathing isn’t strong enough when I’m flat on my back. It’s so devastating. There needs to be a breakthrough to find some form of treatment and hopefully one day a cure.”
This is why she is backing our crusade for Government funding for nationally co-ordinated targeted research into MND.
Jo said: “We have progressed so much with so many other illnesses, like cancer and HIV, you can now treat them, there are options. For MND there are not any options and I feel it has been left behind.
“It takes such a long time to find something and it has to go through so many stages if it is a new drug, for example. But MND does not wait. If I could send a message to the Government it would be that MND affects one in 300 people.
“We desperately need something, even just to slow it down, even if we don’t find a cure, to give people a better quality of life, so it’s not as devastating a terminal illness and something you can live with and have a certain quality of life.
“A proper targeted amount of funding could make a real difference in moving research forward more quickly.”